I will speak plainly.
I have post Sakura-con blues. I also have a new future I have to choose and meanwhile I am trying to write a post about that and responsibility. I ask myself how do I take personal responsibility in a system where ‘Cover your ass’ and ‘Keep your job’ is more important THAN the job (To take care me the patient, do home care, etc)? Except THIS HOUR I have a fever which is cooking my brain because I exercised and caused a system collapse including heart and a core temp spike.
I have a fan and air conditioner pointed at me, the window is open and it is cold and overcast. I have ice around my neck, chest and back. I burn. My brain burns with superheated blood.
I chose to exercise for the 10K in 9 days. I chose to wheel to the framers to get matting done for presents to send.
I am depressed, not post Sakura-con but genuinely depressed: a melancholy. Except I am not supposed, as a severely disable degenerative person to be allowed the full range of emotions of humans. Much as people with chronic conditions which require constant maintenance are not allowed full emotions. When a loss of determination, or despondency, or depression could cause death, or dramatic and permanent loss of function, I cannot be allowed to BE depressed. When over excitement and joy, when fully engaging can also cause a crash and death, I cannot, for my own good be allowed that as well. Linda has a whole story for this picture, how this girl was carrying flowers to someone, and fell, and lost that joy, that confidence of not caring what others think but now, injured, with dirty clothes, and ruined flowers.... I think she had an ideal of dreams which now is broken. I feel that.
You do not want to be me or where I am, in body or in mind. As I am sifting my life, myself, trying to find what parts of me I can afford to keep. I learned from Sara that having medical conditions you ignore doesn’t mean it ignores you. And that you DO die in the end. But you can live in between. It is only how to find that living which is difficult right now. I WANT the simple and beautiful life, I want to be this, cat girl with cat, and happy. But that is far from where I am now. I don’t know how to get there, to the part where I am happy. I can’t taste, I can’t drink, I only seem to have different levels of pain, instead of any pleasure, and yet I WANT to care about MY life.
I know this feeling, as I had it when I was abused. And I locked part of myself away, a scared child chained into the room of hell. And there it went insane for the next 20 years until it wrote and ripped itself free. Like back then I am always in pain, suffering. I am emotionally and often verbally abused daily. I try but I often feel I cannot please anyone, myself included. Caretaking is a learning curve and those closest to us hurt us the most. When Linda was hurt, and she was hurt a lot for a LONG TIME, she took it out on the one person she knew couldn’t strike back. She doesn’t do that anymore.
Yet others do. And now, in order for self preservation I need to educate people from care workers to cab drivers about my health conditions. They make a joke of it. They are uncomfortable and bigots: if you fear it, and it is a different race, keep your mouth shut. If it is a disability, make a joke, tell them how lucky they are...(to sleep so much, to sit so much, “I wish I could spend so much time in bed”).
Last night, my night worker did not bring an alarm clock, she suggested that she let the opiates wear out and my screams would wake her to give me more pills. She was serious. I told the supervisor. The woman will be sent to someone else and if you don't give her an alarm clock, you will end up screaming.
A couple years ago I never owned a skirt, much less a dress, and yet I now wear skirts because, I was told girls in wheelchairs don’t. I WOULD have sex with a guy if Linda will let me, or if she doesn't get her butt in gear. I do it, I think it because I have nothing to lose. I will die. I will die. I will die. There IS nothing to look back on, nothing to regret.
I am most of all alone. That is what they medically told me. That I am alone, that the pain I feel is mine alone, that the way my nerves die are mine alone, that even my autonomic failure is unique. I am a freak, and I am going to be ‘life shortened.’ So how do I live? Do I hang on to the old Elizabeth McClung, do I have time to take a risk on one or two new Elizabeth’s? Or must I, like when I was tortured, lock away the parts of me which are the most secret. No. Instead I will lock away the parts that are most socialized and let loose the parts most secret.
Every single thing I can understand and claim for myself is precious. If I do it myself it is precious. If I accomplish or get it with help of people it is precious. Even if I just find if; if it is a gift, or if it just arrives in the post it is precious. I don't have the luxury of a life where I can be selective of any small thing that brings pleasure.
If I can live through a manga the idea that I am in love again, or that I am out on an adventure, or just to forget the pain, it is precious. I work every day to try and support people and send gifts. I fight to do that not because people will like me, though I would like that, but rather so that I have not given in to the whisper which is now ever present. It says, “Do nothing, you have tried enough, you have worked enough, it is twice the pain it was a week ago, 10 times the pain and struggle of what it was two months ago. The more you continue the harder it will get. Just lie there, just do nothing and accept it.” I have written the post to end the postcard project at least five times. But I keep sending postcards.
I will die. I will die. I will die.
Dying is some of the most peaceful and pain free moments I have. I sometimes long for it if the day is hard; hope for the ‘zone’ in which I don’t need to breathe and don’t for minutes at a time. It is almost always green or white, always pleasant then and there. I follow a hotel hallway or a forest path, there are people waiting for me up ahead. Yes, I KNOW it is the scream of my brain deprived of oxygen, throwing up feel good drugs. I know that and yet I still seek these times. I even push away Linda and Cheryl, and try to go back, if they would but SHUT UP! I have cried and cried for being here, for them saving me. Because here hurts so bad, in more ways than simply pain.
I have to find a life that competes with that. Almost every successful female I know has some form of self-harm or ways to adapt to stress which if continued would be self harm. The only way I learned to stop self harming is to take responsibility. I realized that yes, my mother and grandmother gave me an eating disorder and my Father (capitalized for God the Father he played and gave old testament lessons of pain) taught me that pain IS learning. Oh how I was taught that perfection is attained through pain. I saw the patterns, and the triggers in myself and yet, as they did not take responsibility to help, I took personal responsibility. They might be the triggers, my boss might be the trigger, my GP might be the trigger and yet it was ME, and me alone who was responsible for the fight to NOT cut. I fought depression by running to bring up my heart rate. But sometimes I fought by just sitting still and not doing anything self destructive. I have nothing but the deepest respect for those who fight depression, who fight self harm. Sometimes, the voices are too loud, the depression gets on top of you but one day you will return and you WILL beat it.
Linda says the worst part of my disease is that I have lost all the therapy, the years of overcoming and now I live in a world that was 10-15 years ago memory and dream wise. My triggers and wounds are fresh. Is the 10K an act of defiance, an act of identity or an act of self harm? How do I separate the self and the self-harm? Is there joy without pain? Can the rose bloom without the thorns? I only hurt myself, that’s what I told myself, but in reality I hurt every person who cared about me. I would take that back if I could.
I will put up a more complex post later. Right now I have to survive. Self preservation is what I MUST do. Sometimes that means fighting myself: that desire to give in to the voices, or to the whispers.
I go into this weekend alone, isolated. And tired, so tired. I remember my last bout in epee, a direct elimination for the quarter finals. I was staggering and almost fell several times. My heart beat was well over 250, and I was in a fever like now. The ref said, “Do you want to take a medical break?” Then later he asked, “Do you want to medically withdraw?” And between the gasps, I had my sword arm resting on my knee and I said, “When I cannot...toe the line...” My head sagged for a minute and I checked to see if my foot was on the starting line, “Then,” I finished, “I will withdraw.”
I didn't quit. I won 15-4. It was a good way to end epee. But I lived on to see my running, my walking, my feeling, my taste, my world turn to one of black and white, a world where most would not want to imagine much less live, where 10 minutes without checking temperature of oxygen can result in permanent damage. And if I want to live, I have to keep going. I want to live. Can't you see the desperation looking out from the darkness?
Yet I will die. I will die. I will die.
I finished Epee, and now, the life I knew from last year is gone too. Spring is here and I need to take responsibility of my disease and my life. I need to find a way to love life, to look forward. I want to care about those who understand caring. I want to support Linda during her five week trail period at work, in which she already has a new boss, new portfolio and everything she used to use or rely on, including her furniture and assistant was stolen from her while on disability. I want to ACT, yet sometimes the best gift is to take care of myself, so that she doesn’t have to.
Is that all life is, a series of monitors, readouts, feedback, oxygen lines, pills, medicine, pain pills?
This is life on the defense: guarding, preserving. I want to go on the offensive.
1 day ago